New Year – what are you wishing for?

New Year’s Day is just a day in the calendar. On New Year’s Eve we go to bed and when we wake up , everything is exactly the same, except it isn’t. Our minds and souls feel very differently about the significance of the date.

Some of us have New Year’s resolutions. We are going to do things better this year. We have set ourselves new goals. We are going to ‘turn over a new leaf’. Try explaining that expression to a child with autism!

But mostly we wish. We wish for so many things.

I remember being single in my thirties. I wished for a partner. Someone I could spend my life with. I pleaded and bargained with myself and the universe. If I get this wish, I will be satisfied.  But of course, once that wish was fulfilled and I was married, I was not satisfied. I wished for a child. Being one of four children, I really didn’t want to have just one child. So secretly , I wished for more than one child. I got my wish. I had twins.

But still I was not satisfied. I wanted more children. Many tears and many years later, I have four boys. When our youngest son was also diagnosed with autism, I was of course upset. I expressed my sadness to a ‘friend’ who remarked ‘be careful what you wish for, your wishes may come true.’

We do not have complete control over our destinies but we can try our hardest to achieve our goals and desires.

Do we wish one big all encompassing wish? A cure for the severe type of autism which affects so many of our children? Or do we wish incremental wishes each year like I did with my plans for a family?

At age three and non verbal, my wish for my boys was to say a word. Then to say more words and years later, to speak.

Some years, my wish has been to win at tribunal. To find a suitable school or college placement for one of the boys. To get an EHCP finalised with what they need and to get funding for it.

Those are practical wishes. They are more within my control and I can fight to get those wishes.

Some wishes are much harder to achieve. I wish for partners for my boys, I think those will be girlfriends if we or they can find them.  I wish for their happiness to achieve their own goals. For Benjamin to become a musician. For Thomas to run in the Olympics. For Hector to work as an artist. Marcus? I don’t yet know his desires but he has talents.

I will wish for all those things for them.

I wish for acceptance of all those with autism. Real acceptance, particularly for those with severe autism who seem to have been forgotten by many.  And yes, a cure for autism for those who want it. I know many parents who wouldn’t hesitate for a moment if there was a cure.

For now, while there is no cure, we will continue to fight for our children. To do everything we can to change the course of their lives.

I wish you all a very Happy New Year and may 2019 be the year some of your wishes are granted.

(Marcus at Kew Gardens’ Christmas lights, tying the wish he had written onto the wishing tree. It was for an xbox one! p.s. He was absolutely delighted on Christmas Day when his wish came true).

mde

 

 

 

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ABA and tribunals

On Facebook yesterday, I read a post by Child Autism UK – ABA formerly known as PEACH back in the days when we started ABA nearly 17 years ago in 2002 when my twins had just turned three.
 
These lines caught my eye…
‘Had a lovely chat yesterday to the dad of one of our early clients. His son did an ABA programme with us many years ago which was funded by the LA. (Even more difficult to obtain then than it is now!)’
It has always been hard to get funding for ABA. People assume it was easier for us many years ago. It certainly wasn’t. I was glad to see the statement above, firstly because it means that maybe, just maybe, it’s a little easier now. Secondly, because it means if we managed to get it on all four of our boys’ statements 16 years ago, you can do it too!
Our tribunal bundle was some research papers that were passed around by anyone going to tribunal. Indeed, my boys took part in a study at the time to try to prove how effective ABA was.
Not many people went to tribunal and there really was very little evidence. We didn’t have mobile phones so we had no videos of sessions or learning. We just had to state our case and talk and write our way into success.
We did VB (verbal behaviour) which was new at that time and a move away from the original Lovaas way of working. We were terrified that the tribunal would reject our new, ‘whacky’ way of working with the boys; learning through play and NET (natural environment training). The boys did not work formally at a table, they learnt wherever suited them best, around the house, in the playground, out and about. Learning can take place anywhere. Would our programme be seen as just playing? It wasn’t. It was very structured although the boys had fun and loved their sessions.
I think the system is very similar still. You start your ABA programme independently and begin gathering all important evidence to show how much and in what ways the children improve. It needs to be very well documented, something which takes time away from sessions but can mean the difference between winning and losing a tribunal.
It is expensive. Running a programme is expensive and that’s why you need LA funding. Prior to the tribunal you need expert reports. Ideally a baseline assessment  from an Educational Psychologist before you start any therapy and then a follow up before the tribunal to show progress. You also need a speech therapist to do similar assessments and then various other professional reports such as an occupational therapy one. If your child is at nursery or school, you also need decent reports from them.
And breathe.
If you don’t already have an EHCP in place, you must submit a request to the LA to assess your child’s educational needs as soon as you can. The process takes six months.  After six months, you will already have evidence that your ABA programme is helping your child. If ABA is not agreed on the EHCP, which it rarely is, you then need to appeal against the EHCP and a tribunal date months ahead will be arranged.

By the time you get to tribunal, it may be that you have self funded a year of ABA. You won’t get any of those costs back if you win.
But, if you are planning on doing ABA for many years, the first year of ABA and the tribunal costs need to be found somehow. I won’t offer suggestions here on managing your finances.
Breathe again and take a deep breath. Going to tribunal is hugely stressful. We did it three times for our three older boys. Every time caused us months of anguish and sleepness nights and what ifs?
The only reason we didn’t have a tribunal for our fourth son was that he was diagnosed at just two and the LA had nothing to offer until age four. Even though the statementing (now EHCP) took the usual six months, they had nothing for him in any educational setting for another year and a half and so they gave us ABA without a huge battle. I like to think having already run three very successful programmes for the older boys, perhaps they knew how life changing it was and that it would be the best thing we could do to help him.
I am forever grateful that we discovered ABA when our oldest boys were newly diagnosed at just three and non verbal. Without a doubt it has transformed their lives and their futures.
In my book A Parent’s Guide to Coping with Autism,  I have written eleven pages about ABA and running a programme in the education and therapies chapter.  (I can do  signed copies of my book if you message me). Otherwise, it’s available everywhere online and in most Waterstones and in some local libraries too.
A couple of useful websites for anyone wanting to know more about ABA and how to set up a programme
http://www.abaa4all.com   –  great info and advice on ABA
http://www.childautism.org.uk  – a parent led non-profit organisation who manage ABA programmes
https://as-uk.org/  – more ABA advice and free ABA saturday schools around the country

Hang in there – it gets easier

I have been reading and reflecting on some Facebook posts from mums with younger ASD children.
‘A gruelling day is often followed by a better day’. I replied…
‘Gruelling years are often followed by better years’.
I’m not sure that actually offers much hope in the moment. The idea that a gruelling day may be a small part of a gruelling year.  No promise that tomorrow will be any different.
There is no quick fix. No miracle cure. And like love, progress cannot be bought with money but with time and dedication.  I can’t say it will be fine next week. It may not be fine next week or fine next month or even fine next year.  It could be years ahead before you look back and realise how things were and how you coped and how much better it all is now.
 
I do want to say, keep going,  keep strong, it gets easier.
The paperwork and the admin and the organising don’t go away. The fights for what our children deserve don’t go away but the everyday stuff gets easier.
 
It’s the little things. I no longer have to do up seat belts, harnesses, spend every journey trying to keep the boys safely in their seats. All that distracts me while driving now is their constant talking and arguing.  That’s huge progress too. The talking. In the early days, they were silent in the car. They couldn’t talk so them all talking at once is music to my ears mostly (just not when I am negotiating traffic!)
Teenage arguments can be challenging. We still have ADHD to battle with and the oppositional behaviour that brings with it. In comparison to a child having a full blown meltdown  due to sensory overload or the inability to communicate, teenage confrontations are way, way preferable. They are normal too. It is normal to challenge your parents, your teachers and the world in general. It was not normal to have to manage a seven year old screaming on the floor, out in public, being stared at by other people.
It’s everything on a daily basis. My boys can feed themselves, dress themselves, make their own sandwiches for packed lunches. They can make choices. They can get a bus on their own. I can’t tell you how liberating that is for them and for me.
I can be upstairs while they are downstairs. I don’t need to watch them every second, every minute. They are safe in the house. I can’t emphasise how wonderful that is either. Not to be on constant alert. Yes, sometimes things get broken or lost but it’s not a big deal now. I don’t have to worry about them injuring themselves any more.  One day I will be able to leave them alone in the house.  That day is getting closer. I now leave them for very short periods, maybe 15 mins but that is how we have always done things. Slowly, slowly and we get there eventually.
That’s why I want to say, hang in there. It takes time. It doesn’t happen overnight. There will be better years ahead.
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